Though the week had been wonderful, our only sour note came on Thursday or Friday night. Emily told me that she saw two littler boys at school pointing and laughing at her. She ran up and yelled at them. :) I'm so proud of her for that. She told me that she yelled something to the effect of "It's not funny! Do you think I want to be like this, on all of these medications and in pain all of the time?" She thinks they were kindergarteners. Poor kids didn't know who they were messing with ;) I feel so sad that she has to go through this, but I'm so proud that she's finally standing up for herself. I cannot wait until she has burned off the Prednisone weight, at least to a point where she can be comfortable & have a sense of balance again.
Also, Kevin's doctors FINALLY called back today. To sum this up, he had tried calling them to find out the results from the cancer scan after the radiation. They returned his call on Friday- only to tell him to schedule his follow-up appointment for May. He yelled at the lady, asking her if he had any other cancer in his body, but she didn't have any idea about his testing or his conditions. She claimed that she would have the doctor call right back. Yeah, sure. So, finally today (Monday) her Physician Assistant called to tell Kevin that he is cancer free! Praise the Lord! Thank you all for your thoughts and prayers. Lord knows that we have needed them. I'm hoping that maybe we will have a fantastic rest of the year. I'll take boring, too!!!
Monday, March 14, 2011
JA Picnic, Make A Wish
After I got home from work, I laid down to watch TV, and woke up 5 hours later!!! (Oops!) The great part about it? It's 4 A.M., almost everyone is asleep, and I now have time to update without everyone talking to me at once :)
This has been a wonderful week! Starting with last Saturday, (which I realize is now more than a week ago). Last week, we made the trip over to Orlando to join up with the Arthritis Foundation's Juvenile Arthritis Family Picnic :) Unfortunately, Kevin was still radioactive and in isolation so he couldn't go, but I packed up all three kids. Gir thought that she would be bored. I knew better :) I knew that there would be some older siblings there. It is so awesome to be able to get the kids together with other kids that are suffering in ways similar to them. The beautiful thing about this is that when they get tired, no one bugs them to keep going. These kids understand each other in ways that most other kids can't. If they can't run, no one is going to name call, or harass them to get their way. The kids had a wonderful time connecting. It was really cool to look around and see the ways that certain people clicked with others. My son followed around little Dakota, the older woman for him :) Little Carolina & Cole clicked as well. They are both so little that it was absolutely adorable watching them! I tried to get pics but totally missed the opportunity. Emily made a special friend, also. I had wanted Emily to meet Parker for quite some time. I just knew that they would click. They seem to have similar problems at the moment, too. Em is really shy; she wouldn't just go talk to him. Somehow, they finally got talking! They chatted away for quite some time. They really understood each other- so important right now. While the kids were busy playing and getting to know each other, the adults had the opportunity to chat and compare notes. I had met most of our mom's before, but it honestly felt like I knew them all so well. (Thank you, Facebook!) It is so important to share your triumphs and frustrations with people that understand!!! Heidi brought books, including one that she had made based off of her blog! (Pretty cool, huh?) She also brought a few classics that got passed around. Some were for kids and others were for us adults. When this is what you live and breathe but don't get to talk about much to people in your normal daily life, this is very important. There is so much sympathy from family to family, children and parents alike. Those that are going through a LOT still think about other that are going through less. We have an amazing extended family now that I am so blessed to have met. Some great things really do come out of bad situations!
Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home. She ended up going to the ER the next day and staying at the hospital for four days. You would never have had any idea that she was ill watching her play. We all know that often you can't tell with our kids. These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick. Of course, I think we all panicked over this. Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick. For some it would be just plain disasterous.
I had such a wonderful time on Saturday that I actually felt relaxed for the whole week. Maybe having a three day weekend helped, too. I have been in a fantastic mood all week. By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come. On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better. Not that she's been unpleasant. Not by any means! It's just that she seemed to have no will to do anything before. It was so sad to always see her sitting at scouts alone while everyone was playing. They weren't excluding her; she was just too unhappy to want to play. Just thinking about her wishes has made her happier. Having them come over just made it real to her; she knew that I was truly following through with what I said.
When our Make A Wish volunteers came, they came bearing gifts for all of our kids. That is so important. I'm so happy that they try to make the siblings feel special, too. I try so hard to love them all equally, but of course there are more demands from Emily. I have to spend more time with her. No, we can't just go places like other families can. It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc. Most of the time we are home. It takes a toll on the other kids. I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns. Anyway, one volunteer sat with me and we filled out paperwork and talked about the future. The other one sat with Emily and together they decided on her wishes. (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.) For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess. They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan. It really didn't take long, and I think that Emily feels really good about this. It is so exciting to think about! Our rheumy said that they almost never turn down a Disney request.
I truly hope that the Disney one gets granted. That is what she wants most of all, and of course that is what all 3 kids will enjoy most. I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to. I have heard that they make it absolute magic. No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families. There's also a Cinderella meet in the castle. She would love that!
I am also using this as incentive to get her moving. I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there. I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too. It's amazing what we'll do when there's something to look forward to! I'm hoping that this will also help her to burn off some of the steroid weight. This week we decrease her dosage to 9MGs daily! I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off. One wonderful thing about the steroids is that she finally eats!!! This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird. Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food! Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much! It's better than being 42lbs at age 9, right? She's earned a new nickname: Sharky! :) She's so funny! We are soooo blessed! She's had a few joint issues, but nothing major. Her Remicade is increasing at her next appointment. Hopefully that will do the trick. My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week. She usually starts to hurt the day before, so I hope this doesn't result in a flare.
I have got to get to bed! Have a wonderful Monday! :)
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| Emily & Parker |
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| These 4 got along so well! My son has a huge crush on Dakota, and Emily & Parker clicked quickly. |
Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home. She ended up going to the ER the next day and staying at the hospital for four days. You would never have had any idea that she was ill watching her play. We all know that often you can't tell with our kids. These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick. Of course, I think we all panicked over this. Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick. For some it would be just plain disasterous.
I had such a wonderful time on Saturday that I actually felt relaxed for the whole week. Maybe having a three day weekend helped, too. I have been in a fantastic mood all week. By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come. On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better. Not that she's been unpleasant. Not by any means! It's just that she seemed to have no will to do anything before. It was so sad to always see her sitting at scouts alone while everyone was playing. They weren't excluding her; she was just too unhappy to want to play. Just thinking about her wishes has made her happier. Having them come over just made it real to her; she knew that I was truly following through with what I said.
When our Make A Wish volunteers came, they came bearing gifts for all of our kids. That is so important. I'm so happy that they try to make the siblings feel special, too. I try so hard to love them all equally, but of course there are more demands from Emily. I have to spend more time with her. No, we can't just go places like other families can. It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc. Most of the time we are home. It takes a toll on the other kids. I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns. Anyway, one volunteer sat with me and we filled out paperwork and talked about the future. The other one sat with Emily and together they decided on her wishes. (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.) For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess. They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan. It really didn't take long, and I think that Emily feels really good about this. It is so exciting to think about! Our rheumy said that they almost never turn down a Disney request.
I truly hope that the Disney one gets granted. That is what she wants most of all, and of course that is what all 3 kids will enjoy most. I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to. I have heard that they make it absolute magic. No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families. There's also a Cinderella meet in the castle. She would love that!
I am also using this as incentive to get her moving. I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there. I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too. It's amazing what we'll do when there's something to look forward to! I'm hoping that this will also help her to burn off some of the steroid weight. This week we decrease her dosage to 9MGs daily! I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off. One wonderful thing about the steroids is that she finally eats!!! This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird. Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food! Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much! It's better than being 42lbs at age 9, right? She's earned a new nickname: Sharky! :) She's so funny! We are soooo blessed! She's had a few joint issues, but nothing major. Her Remicade is increasing at her next appointment. Hopefully that will do the trick. My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week. She usually starts to hurt the day before, so I hope this doesn't result in a flare.
I have got to get to bed! Have a wonderful Monday! :)
OT Misc rambles
I meant to post last week. Due to Kevin's video card dumping on him, there are now 3 other people sharing my computer. Considering that we have more often than not had 3 computers running at a time, this is a huge inconvenience for us all. Needless to say, my time on my computer has been limited! Thankfully, his new card should be here by Thursday. I wish his pc had waited a week or two to toast. I wish that I could say that his medicine would work immediately and he would have instant relief, but that is far from the case. He's still feeling just bad. He is tired 24/7, and he still feels swollen and cold. A perfect time to just sit at the computer and mindlessly click things to help take your mind off of it. Hopefully soon... At least he isn't a danger to the household anymore :) One thing that is interesting while watching all of the horror that Japan is going through: he's been watching how they are scanning the thyroids of people suspected of radiation poisoning. We have learned more about that this week.
I want to extend my deepest condolences to the people of Japan. This is been hard on us. My friend Chris (Hirohide) and his children live in Aomori. Gir & I spent a panicked first day looking for info on their prefecture. Once their power came back on, Fiona emailed Gir and let her know that their family is just fine! They had a crack form in a wall and the power was off for almost the whole first day, but otherwise they are ok. Shaken, but well. I am so happy that Gir & Nona keep in touch. They were best friends until Nona moved there, and now they stay pen pals. I'm so glad. I know that they got very lucky in their area, but obviously many were not so lucky. It is so sad watching the destruction on the news. It's unreal, like a movie. Please keep these people in your prayers.
I want to extend my deepest condolences to the people of Japan. This is been hard on us. My friend Chris (Hirohide) and his children live in Aomori. Gir & I spent a panicked first day looking for info on their prefecture. Once their power came back on, Fiona emailed Gir and let her know that their family is just fine! They had a crack form in a wall and the power was off for almost the whole first day, but otherwise they are ok. Shaken, but well. I am so happy that Gir & Nona keep in touch. They were best friends until Nona moved there, and now they stay pen pals. I'm so glad. I know that they got very lucky in their area, but obviously many were not so lucky. It is so sad watching the destruction on the news. It's unreal, like a movie. Please keep these people in your prayers.
Friday, March 4, 2011
Our latest crazy update
Where does the time go? I feel as though I haven’t had an extra second for days now. Holy frustrating week!!! I thank God that I have a 3 day weekend coming up. I really need some down time, & some fun thrown in!
Monday started the week with Kevin going in early for his one big radiation pill. We knew that he would need his own bathroom, and that he was supposed to eat using disposable stuff. No contact. Yeah, that was the start of all of the other things that they should have told us but didn’t. He got home from the hospital as I was trying to get the kids off to school, telling me that everything we were told was just the tip of the iceberg. He couldn’t be within 6 feet of anyone. Like, they asked him if there was another bed within six feet, even with a wall separating. If so, that person in that other bed could be in danger. Doesn’t that give ya’ the warm fuzzies??? Better yet, anything that he wears or sleeps on has to be stored away after his seven days of confinement for a full week before it can even be washed. Wow. His plates, forks & cups have to be thrown away in their own bag and stored away for a week before we can put it out for the garbage truck. And he has to carry a card with him (once he’s allowed near people again) saying that he’ll be radioactive until May 21, 2011. He will set off Geiger counters. (He has a half life!) Yay, huh? Yeah, we had no idea what we were getting into. This gave us both this grim, scary feeling about it. It’s been very surreal as he put it. It’s freaky. I know it’s necessary. I know that this is a precaution; I’m trying not to get too absorbed or freaked out by it, but it’s scary. One funny that came out of it... one of our wonderful, beautiful children expressed their disappointment last night that Daddy wasn't actually literally glowing. The kids had expected him to glow like a Christmas tree. LOL!!! He slept through the first 3 days for the most part, but I think he's recovering now.
That Monday night, Make-A-Wish was supposed to be here. Our volunteer has Lupus. She’s on Methotrexate & steroids, just like Emily is. She panicked when I called her to ask her if they’d like to reschedule. We rescheduled for this upcoming Wednesday. She didn’t think she could be around the radiation. That made me worry, so I called our rheumy to make sure that I didn’t have to move Emily into a hotel for the week. I also realized that Tuesday was our Gainesville day, & I had been expecting Kevin to be able to take Zach to school. I realized that I would have to leave before I could even drop him at school, and there’s no way that I would be back in time to pick him up. I asked my parents to get him, but dropping him off here wouldn’t be a good option with no one to take care of him, so I kept Zach with us when we went to Shands. It was a longer drive than usual. Construction and the endless “are we almost there, Mom?”’s kept me busy. That boy had me so busy while we were at the hospital that I didn’t have a spare minute. Usually the time drags by. I totally expected to catch up on Facebook, but I didn't have any time at all to.
Her appointment was AWESOME!!! They seemed amazed by how well she's doing. For the first time her muscle enzymes are down! When she was admitted in October, her ALD was a 15.1. The normal range is 3.3 to 9.7. This week Em’s was a 9 -- within the normal range! I was supposed to get a copy of her labs, but we all forgot. We have more of a decrease plan for her steroids! I am so thrilled that by the end of the month she will only be on 9mgs daily, and after her next appointment it should be down to 6mgs! Her attitude has been better with the decreased steroids, as well as the prospect of Make-A-Wish. That has helped her to feel better. They said that she will be on steroids for a total of 2 years, but from next month out it should be very low, maintenance doses. They said that at about 6mgs you see the water weight start to drop off. That will help a LOT!!! Her elbow has been hurting her, and she’s had that sternum pain lately so we’re increasing her Remicade next time, but I’m comfortable with that. We discussed sun rules, since sunburn can actually cause a disease flare (which would NOT be good!), we discussed shampoos. For whatever reason, the steroids make her scalp dry, which is normal, but her hair is very oily. They say that’s weird- usually the hair dries out and starts to break off. I thought that was interesting. To make things even better, they were able to get her IV with one poke, and get a ton of blood from her on the first try! I’ve been telling her that it’s the steroids that were making it hard; I think she finally believes me!
Last time she went, she felt well enough the next day to go to school & therapy. This time… no such luck. I had panicked a little bit, trying to figure out how to make all of these things work again. Thankfully, my work is very understanding. I was able to stay home with Em yesterday. Heck, I won’t lie- I needed it, too. I wouldn’t have called out for myself, but Emily not feeling well offered me a chance to breathe & vegetate. Also, Kevin hadn’t eaten all day Tuesday while we were at the hospital because he’s afraid to touch anything. I can’t take care of him the way I’d like, but I can kind of help him out that way. Jeez, had we known how complicated this was going to be he’d have just stayed at the hospital. Or I’d have taken the week off. We truly had no idea. So that has been this week’s roller coaster. I hope you’ve enjoyed the ride. Now please get off before you start to lose it, too!!! J We’re trending up. I can feel it. We can laugh about it now :)
Tuesday, February 22, 2011
What a crazy week!!!
Well, probably 2 weeks is more accurate. Has it been that long? I guess so!
I shall start with getting Emily's chair. You know that things are rough when you're excited about getting your child a new wheelchair. However, this opens us up to be able to do several things that we haven't been able to do. Things like, go for a long walk in the woods. The new chair can handle that! Go to a fair or other place that would have us walking around a lot. Granted, we had a chair before, but for one it was "an old people's chair". She never complained, she just didn't feel comfortable. Also, there was no restraint. She felt like she was going to fall out. So this was very exciting! We are hoping to be able to go to the Renaissance Fair when it comes to town. We will definitely need a good chair for that. (If we wait until March 20th we can renew our wedding vows- just in time for our 15th anniversary on April 5th!)
Kevin had the appointment made for him to go in for his radiation, only to be told that the doctor that made it didn't know the whole situation, and his thryoid counts weren't low enough. Our doc canceled the appointment, telling him to get more labs done on Wednesday. Of course, being without meds while they wait for levels is making him feel like the human slug- sluggish, swollen, forgetful, cranky and sore. Not too much fun. He's holding up well, but only because there isn't really much of a choice. He forgot to do labs on Wednesday, and by Thursday we had a sick boy. DangerBoy stayed home from school Thursday & Friday both, so Kevin didn't go to the lab until Friday. (By that point our boy felt a little better and wouldn't be contagious.) We're hoping that they will call tomorrow to schedule him. We shall see!
My father went in for the angioplasty to find that it wasn't a stent that he needed. I was very concerned because so many other things around this time seemed to be falling apart for other people. It almost seemed taboo. It turned out that, in his words, there was a kink in the artery. ????? I don't get it, but that's what he said. I've asked him to find out the medical terminology so that I can research it. The good news is that he's fine! My mother had taken the info to give me at first, but she messed it all up out of nerves. She told me there was a 40% blockage but they weren't going to do anything about it, and that he had to stay overnight because they had given him something and had to watch him. Yeah, they gave him a hole in his groin and a six inch metal wand to go inside of the hole! It was a very confusing, stressful day. By the grace of God, he's home and doing great now!
Next came the letter from Make-A-Wish foundation! They sent a parent packet so that you know what to expect, what we will need to have, and so on. We still had some questions, but we figured we would wait until they called to ask.
I believe it was the next day that I watched a pedestrian get hit by a car. I have been trying to find some news on her condition, but so far nothing. The day that it happened I held it together really well. That's the great thing about constant medical chaos and perpetual stress- you handle trauma very well. The next morning I couldn't get the images out of my head. Thank God I didn't see the entire thing. I watched her cross the road most of the way, then I turned my attention to the traffic light. I heard the noise, looked up and saw her flying. I know I didn't have to stop- technically I didn't see the whole thing, but I knew enough to be able to tell them that the driver couldn't possibly have seen her. She didn't seem to realize that the turn lane didn't stop. She just ran right into the car. It turned even more nightmarish after her husband came over, obviously distraught, and yelled out to the paramedics that she was one month pregnant. Yes, I know it could have been worse, but it was horrible. Like a scene out of "Final Destination".
Friday & Saturday this week were unremarkable! I love those days... Sunday after work was wonderful! We went over to Kevin's aunt's house for his grandmother's 93rd birthday. Poor Grandma now has poor memory added to the poor hearing & vision, but she's so sweet, so full of stories. It was a very pleasant evening spent with family that we really don't see often enough. We always have such chaos. It's work, or medical or kids. We're just so busy! It's hard to find the right balance, but at least we make some time.
Lastly, tonight a Make-A-Wish volunteer called to make our appointment! I went into my room to talk to her, knowing that I would break down a little talking to her. I asked her- just to clarify- if our doctor had sent her blessings already. Just to be clear. I had assumed so, but this is so, so good that I didn't want to get Em's hopes up only to have them crushed. She assured me that yes, we are cleared. I cried. I know that this will give her something to look forward to, and then later it will give her lifelong memories. And they will take good care of her, and our other children! Emily has her heart set on going to Disney World here. She's always wanted to fly so I've been trying to convince her to fly to Disney Land if she wants to do Disney, but I also told her that it's her choice & I don't care what she wants to do. If she is dead set on Disney here, there is another fantastic non-profit that I discovered on my Juvenile Myositis Facebook group. Give Kids the World focuses on completely spoiling the family during their stay. I've been trying to help her to understand that she can pick ANY wish that she desires. Some kids have gone to Puerto Rico, some to swim with the dolphins. Others have met their favorite star, gone to an event, traveled to Oregon in an RV, had a bedroom make-over. As long as it's something that makes her happy we're good.
I'm not sure where we stand on her health right now. She said the other night that her arm hurt, but she couldn't tell if it was her elbow or her upper arm. Today it was definitely the upper arm, in the muscles. Her legs are good though, with the exception of the rash flaring up again on her knees. Today it looked almost purple. Most days it's puffy pink. I'm taking my notes and debating on what to do. Tonight was her Methotrexate injection. I'm hoping that will help and she'll be fine. Otherwise, I think we'll have to go back up to 6MLs (18MGs) of Prednisone. I really don't want to do that. I know that she doesn't either. I'm hoping to prevent it. We shall see.
Tomorrow I also meet up with fellow blogger & JA mom! We've been talking on Facebook and occasionally on the phone for quite some time now. It will be so good to meet! Can't wait!
I shall start with getting Emily's chair. You know that things are rough when you're excited about getting your child a new wheelchair. However, this opens us up to be able to do several things that we haven't been able to do. Things like, go for a long walk in the woods. The new chair can handle that! Go to a fair or other place that would have us walking around a lot. Granted, we had a chair before, but for one it was "an old people's chair". She never complained, she just didn't feel comfortable. Also, there was no restraint. She felt like she was going to fall out. So this was very exciting! We are hoping to be able to go to the Renaissance Fair when it comes to town. We will definitely need a good chair for that. (If we wait until March 20th we can renew our wedding vows- just in time for our 15th anniversary on April 5th!)
Kevin had the appointment made for him to go in for his radiation, only to be told that the doctor that made it didn't know the whole situation, and his thryoid counts weren't low enough. Our doc canceled the appointment, telling him to get more labs done on Wednesday. Of course, being without meds while they wait for levels is making him feel like the human slug- sluggish, swollen, forgetful, cranky and sore. Not too much fun. He's holding up well, but only because there isn't really much of a choice. He forgot to do labs on Wednesday, and by Thursday we had a sick boy. DangerBoy stayed home from school Thursday & Friday both, so Kevin didn't go to the lab until Friday. (By that point our boy felt a little better and wouldn't be contagious.) We're hoping that they will call tomorrow to schedule him. We shall see!
My father went in for the angioplasty to find that it wasn't a stent that he needed. I was very concerned because so many other things around this time seemed to be falling apart for other people. It almost seemed taboo. It turned out that, in his words, there was a kink in the artery. ????? I don't get it, but that's what he said. I've asked him to find out the medical terminology so that I can research it. The good news is that he's fine! My mother had taken the info to give me at first, but she messed it all up out of nerves. She told me there was a 40% blockage but they weren't going to do anything about it, and that he had to stay overnight because they had given him something and had to watch him. Yeah, they gave him a hole in his groin and a six inch metal wand to go inside of the hole! It was a very confusing, stressful day. By the grace of God, he's home and doing great now!
Next came the letter from Make-A-Wish foundation! They sent a parent packet so that you know what to expect, what we will need to have, and so on. We still had some questions, but we figured we would wait until they called to ask.
I believe it was the next day that I watched a pedestrian get hit by a car. I have been trying to find some news on her condition, but so far nothing. The day that it happened I held it together really well. That's the great thing about constant medical chaos and perpetual stress- you handle trauma very well. The next morning I couldn't get the images out of my head. Thank God I didn't see the entire thing. I watched her cross the road most of the way, then I turned my attention to the traffic light. I heard the noise, looked up and saw her flying. I know I didn't have to stop- technically I didn't see the whole thing, but I knew enough to be able to tell them that the driver couldn't possibly have seen her. She didn't seem to realize that the turn lane didn't stop. She just ran right into the car. It turned even more nightmarish after her husband came over, obviously distraught, and yelled out to the paramedics that she was one month pregnant. Yes, I know it could have been worse, but it was horrible. Like a scene out of "Final Destination".
Friday & Saturday this week were unremarkable! I love those days... Sunday after work was wonderful! We went over to Kevin's aunt's house for his grandmother's 93rd birthday. Poor Grandma now has poor memory added to the poor hearing & vision, but she's so sweet, so full of stories. It was a very pleasant evening spent with family that we really don't see often enough. We always have such chaos. It's work, or medical or kids. We're just so busy! It's hard to find the right balance, but at least we make some time.
Lastly, tonight a Make-A-Wish volunteer called to make our appointment! I went into my room to talk to her, knowing that I would break down a little talking to her. I asked her- just to clarify- if our doctor had sent her blessings already. Just to be clear. I had assumed so, but this is so, so good that I didn't want to get Em's hopes up only to have them crushed. She assured me that yes, we are cleared. I cried. I know that this will give her something to look forward to, and then later it will give her lifelong memories. And they will take good care of her, and our other children! Emily has her heart set on going to Disney World here. She's always wanted to fly so I've been trying to convince her to fly to Disney Land if she wants to do Disney, but I also told her that it's her choice & I don't care what she wants to do. If she is dead set on Disney here, there is another fantastic non-profit that I discovered on my Juvenile Myositis Facebook group. Give Kids the World focuses on completely spoiling the family during their stay. I've been trying to help her to understand that she can pick ANY wish that she desires. Some kids have gone to Puerto Rico, some to swim with the dolphins. Others have met their favorite star, gone to an event, traveled to Oregon in an RV, had a bedroom make-over. As long as it's something that makes her happy we're good.
I'm not sure where we stand on her health right now. She said the other night that her arm hurt, but she couldn't tell if it was her elbow or her upper arm. Today it was definitely the upper arm, in the muscles. Her legs are good though, with the exception of the rash flaring up again on her knees. Today it looked almost purple. Most days it's puffy pink. I'm taking my notes and debating on what to do. Tonight was her Methotrexate injection. I'm hoping that will help and she'll be fine. Otherwise, I think we'll have to go back up to 6MLs (18MGs) of Prednisone. I really don't want to do that. I know that she doesn't either. I'm hoping to prevent it. We shall see.
Tomorrow I also meet up with fellow blogger & JA mom! We've been talking on Facebook and occasionally on the phone for quite some time now. It will be so good to meet! Can't wait!
Saturday, February 12, 2011
Addressing the inaccuracies
I had the misfortune of reading an "education article on juvenile arthritis". Unfortunately, reading this was akin to how I would imagine reading a JA article in the National Enquirer would be. The educational content was significantly lacking at best, downright ignorant & hurtful to the cause at worst. As a parent of a child that has had arthritis for several years now, I have seen, read, and had conversations that absolutely floored me, but this one still has me angry a week later. The link to this misinforming JA article is here. If not for copywrite laws I would copy & paste it. Apparently, the "doctor" that wrote the article writes these and leaves them on his blog. The majority of his writing is riddled with errors; some advice is dangerous in other articles.
What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all. He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him. This can be very detrimental when the subject is something like JA. We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age. AA is an AutoImmune disease; the body is attacking itself! No one knows why this happens.
The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore. Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease. I'll let that slide because some old school docs still refer to it as JRA. (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it. It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.) Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera. These diseases are all different, yet they are all forms of arthritis. Yes, children can get them all.
From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk. Symptoms can appear at any time. I've never read that boys symptoms show after girls. That could be correct, but I could neither prove nor disprove that one. I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time." The first thing that I have to laugh about here is this: AutoImmune disorders are a result of an over-active immune system. This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors. Some children are lucky enough to have it "disappear", otherwise known as remission. They are not "cured". Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it. How many people do you know of that had Lupus just go away?
This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver. Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement. He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day. So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis? Somehow, I think not. He seems to place a lot of blame on the parents. I can honestly say that I did everything right during my pregnancy with my JA child. I didn't drink or do drugs (and still don't, thank you!). I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations. I did everything right. So, this is my fault? If any of my children should have gotten JA then, it would have been my oldest. My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition. I certainly could have done better. And she's perfect. Go figure.
He believes that better nutrition would benefit. Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this. There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly). In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet. Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system. Many are gluten sensitive and feel much better with a gluten-free diet. Some can't digest sugars properly either, and they feel better cutting sweets out entirely.
The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA". Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way. I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to. He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way. I realize that Oriental medicine is much different than traditional US medicine. I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true. However, I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.
On a side note, Emily's new wheelchair came in! We are very happy about this. I am thrilled that it came in before a myositis flare left her incapable of walking, for one. Obviously, we are hoping that will never happen, but since the odds are not in our favor we felt like getting a chair in quickly would be for the best. Currently her endurance and stamina are not good. She tries very hard, but if we have a lot of walking to do she simply can't do it. Walking from the car to her doctor's office at the hospital wears her out. We use the chair to get the the parking garage on one side to her doctor upstairs and at the opposite end. If we happen to go to the mall (which is very rare, thankfully) she can't handle that. Partially it's because her legs can't do it, but also because the steroids have puffed her out so badly that she can't get comfortable. Of course, she went from 42 lbs to 62 lbs in a month. I think 30% went to her face, 50% went to her belly, and the rest got spread out. Her belly went from not having an extra ounce to looking like she was due with twins any day. That does not make it easy to move. Her feet are having a rough time adjusting, too. It's a lot of extra weight added very quickly. Still, she's very blessed. Many JM kids are still bedridden for months and months. She was only mostly down for about 2 months; at her worst she could still drag herself across the house to the bathroom. Many kids can't. I shall leave with a new pic of Em in her chair :) We had just gotten her out of her bath; I hadn't had a chance to comb her hair or anything yet. We were rushing to get her into bed, but I really wanted to get it set up in case we're in a hurry the next time we need it. The pictures were an afterthought.
What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all. He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him. This can be very detrimental when the subject is something like JA. We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age. AA is an AutoImmune disease; the body is attacking itself! No one knows why this happens.
The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore. Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease. I'll let that slide because some old school docs still refer to it as JRA. (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it. It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.) Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera. These diseases are all different, yet they are all forms of arthritis. Yes, children can get them all.
From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk. Symptoms can appear at any time. I've never read that boys symptoms show after girls. That could be correct, but I could neither prove nor disprove that one. I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time." The first thing that I have to laugh about here is this: AutoImmune disorders are a result of an over-active immune system. This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors. Some children are lucky enough to have it "disappear", otherwise known as remission. They are not "cured". Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it. How many people do you know of that had Lupus just go away?
This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver. Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement. He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day. So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis? Somehow, I think not. He seems to place a lot of blame on the parents. I can honestly say that I did everything right during my pregnancy with my JA child. I didn't drink or do drugs (and still don't, thank you!). I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations. I did everything right. So, this is my fault? If any of my children should have gotten JA then, it would have been my oldest. My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition. I certainly could have done better. And she's perfect. Go figure.
He believes that better nutrition would benefit. Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this. There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly). In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet. Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system. Many are gluten sensitive and feel much better with a gluten-free diet. Some can't digest sugars properly either, and they feel better cutting sweets out entirely.
The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA". Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way. I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to. He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way. I realize that Oriental medicine is much different than traditional US medicine. I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true. However, I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.
Monday, February 7, 2011
Staying Strong
Emily is doing pretty well now. The flare actually started to get better instead of worse! I am so grateful for that! She has had a pain at the top of her sternum this week. I'm not sure what that is yet. I was planning on asking her doctor last Tuesday but somehow I managed to forget with the whole myositis flare coming up. She's pretty much over her cold, and doing really well, actually. I'm hoping that this newest Prednisone decrease will start to help the swelling come down more and more. She's still got so much in the belly that makes it hard for her to do all sorts of things.
Kevin is surviving no thyroid meds for a month. It's getting a little more difficult day by day, but he's hanging in. He had his labs drawn Friday, so hopefully his doctor's office will call back (and normally they don't return calls... grrrrr) to say that his hormone levels are at a good enough point to get the radiation pill this week. That will mean a 3-5 day trip to the hospital for confinement, then a full body scan. After that he can go back on his meds. I'm hoping they actually call back this time. He'd like to get back on with his life, please.
The last bit of news is my dad. (Dad & Mom are pictured above) I've been trying to not worry about this because I try hard to only stress about one huge event at a time and well, this didn't fit into the schedule until this week. He's had angioplasty before. He's actually had several. I want to say he had 3 before his double bypass and another 2 after, but to be honest, that was at a time in my life when my little people were not sleeping well, where Emily cried all of the time, and I was so crazy between stress and exhaustion that I literally don't remember several of those years. (At least now the crying is only for infusions and she sleeps, so I sleep! I'm VERY serious about sleep.) Anyway, it's been a few years since we've had to go down this road. He went from being very depressed and not being able to do much to feeling pretty good. I can't say he's been running marathons or anything but he's done well for almost 76. Last week he texted me to tell me that his stress test results weren't great, and that it could be that one of his stents was involved in a recall. (Holy crap!) So, I called them tonight. This has them freaked out enough so they actually went to a lawyer and had a will drawn up along with a living will & power of attorney. That part freaks me out. He may drive me absolutely crazy, but he has a wonderful heart and he means well. He's very smart, very caring. So, if you all wouldn't mind, please keep us in your thoughts and prayers yet again. I am very, very grateful to have such a wonderfully caring community on Facebook. My FB friends & the moms on my groups really have helped me to keep my sanity when I didn't think it was possible. I cannot even believe the amount of things that we've had go wrong in the past ten months, but with the support of great friends and family, we'll be ok. Thankfully, I learned what they mean when they say "Let go, Let God".
Kevin is surviving no thyroid meds for a month. It's getting a little more difficult day by day, but he's hanging in. He had his labs drawn Friday, so hopefully his doctor's office will call back (and normally they don't return calls... grrrrr) to say that his hormone levels are at a good enough point to get the radiation pill this week. That will mean a 3-5 day trip to the hospital for confinement, then a full body scan. After that he can go back on his meds. I'm hoping they actually call back this time. He'd like to get back on with his life, please.
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